July 24: Fairly boring updates

Had a great week at UUMAC.  Took it easy, rested more than usual.

Prednisone now down to 50 mg/week for the last 4 weeks.  Had some minimal lacrimal gland swelling a couple weeks ago so didn't decrease any more.  Will decrease to 45 mg/week (5 mg 5 days, 10 mg 2 days) for 3 weeks and then try another decrease.  Hoping to get down to 35 mg/week  by end of August, and then might need 5mg tablets to cut in half.  My goal is to be off the prednisone by the end of the year. 

Did I mention the plantar fasciitis? Left foot, have been wearing a splint every night.  For some reason the left ankle has been bothering me as well, so taking very easy this week.  I didn't go back to pulmonary rehab since wasn't supposed to change anything before the pulmonary stress test, and now the ankle/foot issues are preventing.  Maybe next week?

Called for results of test, apparently Dr. Forfia was on vacation last week and it didn't get read by him.  The preliminary report when they called back was 'moderate', but then his comment to the NP was 'I've seen worse', which to me would indicate more than 'moderate'.  Considering that he sees people going for lung transplants there was no question I wasn't going to rank up in his top 10 (which is fine by me), so somewhat confusing as to degree.

I was hoping to schedule my follow-up with him in September, giving me more time to lose  weight, but they insisted on August.  It's harder, of course, not being able to move around.  Gained a little, then lost again, so back to where I was at appointment a month ago.  As you probably know, I do better with pressure and a deadline, so  trying to drop 6 pounds before seeing him.  Since he wanted me to increase the diuretic to every other day from the once a week I was doing it may help some.  My left foot & leg always have swelled more than the right, even more pronounced since the second surgery when they had a lot of the bypass tubing threaded through the left groin, suspect there was some damage to the lymph nodes there, as ever since that side has been much more pronounced with edema.  Despite that, I'd attributed not being able to see my foot bones to the swelling from the foot fractures, so it's been a surprise that with more diuretic those bones are once again more visible.  It's harder to recognize what the problem is when there are multiple issues in the same area. 

It's been nine months now since I've been out of work, and there isn't much to show for it.  The first several months were catching up on things long neglected due to the fatigue and not being able to function, and then the last several months have just been one damn thing after another.  What I find strange is my total lack of interest in anything professionally medical. I have no interest in journal reading, no interest in keeping up with stuff, and this isn't good.  Honestly, I'm not sure if this is some sort of reaction to stopping work and feeling as if my career is over?  I'm willing to admit to some reactive depression, which would be pretty normal, especially under the circumstances of ending my career at a relatively early age.  In talking to Susan the other day I pointed out that the people who did the best in retirement were the ones who had a lot of other interests and hobbies to replace their time and mental interest once they stopped working.   Unfortunately, because the last ten years have been all about survival, I really don't have a lot of hobbies, and before that was working constantly between PA & paramedic on the weekends.  There's the beading & jewelry making, but it loses interest with no outlet, because I can't justify spending money on supplies; I've got plenty of stuff here to work with, but no incentive to do anything.  There are just so  many earrings and bracelets I can make for myself, or for gifts. 

It would be best, under the circumstances, to try and find something to do, as it is allowable to make a little money on disability.  Having a reason to keep up on things would be good for me.  Maybe it's that for my entire life I've always been working towards something, and now there isn't any goal.  Except, of course, maintaining my sanity, which does have some credence as a goal.

And, of course, there is the book to be worked on.......

May not be much of any excitement to report for the next few weeks, although you never know with me.

Thanks for checking in,    Laurie

P.S.  Before signing off got another phone call from Forfia's office:  'aggressive diuresis', so that's going to drop the weight some.  And now I know what I'll be doing a lot of! 

July 11: post pulmonary stress test

Figured this was as good  a time as any to post.  Really want to go to the couch, but  will do this first. 

After weeks of anticipation I finally had the  pulmonary stress test today.  It's a test I've never had, never seen and don't know much about.  Basic review is that you wear a mask as you walk which measures your oxygen and carbon dioxide exchange, which gives detailed information on what changes when you exercise, giving an idea of both lung & heart function with exertion.

Everyone was very nice.  The respiratory tech who brought me back made a comment about how interesting my chart was, I rolled my eyes and said my standard line of 'I'd love to be boring'.   Another respiratory tech, a student and the cardiologist rounded out the audience.  I warned everyone that my tolerance might be worse  due to the bout  of plantar fasciitis that has been going on for the last few months, causing limping.  

It starts very slowly: 1mph, then increases in alternating amounts of incline or speed.  They have you point to a chart to  relay how symptomatic you feel as you aren't allowed to talk with the mask on.   They kept offering to stop, even before 10 minutes was up.  I've  always been of the mindset that if you are doing a test it's not supposed to be all fun, and you push yourself beyond normal.  So I pushed to  15 minutes, and they all told me how wonderfully I'd done, how much longer that was than they were used to, etc.  No results, no indication of what did or didn't show.

I made a comment to the cardiologist before starting that my concern was always that I was exaggerating, that there wasn't as much wrong as I feel like there is.  His reassuring response was 'I've seen your echo, you aren't exaggerating.'  But, again, no results afterwards, and it was clear I was still out of breath for  7-8 minutes afterwards, which is what happens when I push, although my pulse ox was measuring 97-98%. 

My worries, stated before, is if I'm as sick as I feel.   How much is just deconditioning?  Is it my weight?   How much is the autoimmune issue with the damn prednisone?  Am I not pushing myself as much as I should?  Am I exaggerating, even to myself?  It was reassuring to  see the pulse ox drop so dramatically during the pulmonary rehab eval, will it show up to the same extent here as well?

My terror is that they'll say that while I am compromised that my complaints are more severe than they should be.  I'm worried that I'll have to go back to work and be forever the way the last 10 years have been:  a struggle to get through each day, barely able to function, spending any days not working doing the basic errands and shopping, constantly exhausted and feeling like crap every single day. 

I keep going back to before my first stress echo at Presbyterian August 2004.  My comment to the techs who worked with me doing stress tests in my office was that I hoped it showed something was wrong, even to the point of  needing  heart surgery, because I couldn't imagine being told it wasn't that bad and then continuing to feel so horrible.  It was something of a relief, in a weird way, to find out how bad I was then, to the point that they scheduled my surgery before I left the testing center. 

You would think after all this time, and the number of times they have been stunned at how much I was doing considering how bad my heart function was, that I'd no longer feel as if justification was needed.  And yet, I still do.  Maybe because I know that the weight, deconditioning & autoimmune are all factors, but just don't know how much.   And I just can't imagine going back to work when I don't even feel that great after months of not working. 

The good news is that I leave Sunday for a week at UUMAC, the yearly camp with people I just adore.  Since Chester bit, and drew blood on, yet another person who tried to feed the cats when I went to VA  for Emily's graduation it doesn't make sense to try that again.  I found a feeder that goes for  4 days, which gives me more wiggle room.  I'll come back Wednesday afternoon, give Chester wet food, replenish the dry feeder & water, check on any storm damage from the predicted storms the night before and get more things together for the auction that happens Thursday as a fund raiser.  It's a 90 minute drive, but the good  news about being used to an hour commute is that it doesn't seem that overwhelming for an afternoon.

Bidge has alerted me that he was unable to post a comment.  This format is now very outdated, it keeps saying to change to something else, and I'm so computer illiterate that I've just kept putting it off.  Something to do in a couple more weeks, with some help. 

Thanks for checking in,    Laurie